Discover Me is a nationwide research study that aims to analyse health and genetic information on thousands of people. The aim is to increase our understanding of many different diseases, and help improve patient care.

Genetic information is the information held in our DNA that is inherited across generations. By connecting this to information on health, we can study diseases and conditions in much more detail than if we only looked at health or genetic information alone. This provides us opportunities to better understand disease, including:

• Why some diseases affect some people more than others
• Why disease progresses differently in different people
• How to better prevent, manage and diagnose diseases

Studying health and genetic information together in this way may allow us to find new treatments or improve existing treatments for conditions such as cancer and diabetes, and improve the health of future generations. It may also help us monitor and understand disease epidemics and pandemics, such as the coronavirus (COVID-19) pandemic.

Omnigen Biodata (Omnigen) is a Research and Development company registered in the UK (company number 10565653). Omnigen is running the Discover Me study with GP practices and online patient services across the UK.

All research in the NHS is looked at by an independent group of people, called a Research Ethics Committee, to protect your interests. This study has been reviewed and approved by the North East - Tyne & Wear South Research Ethics Committee (study reference 19/NE/0020).

You can take part if you are aged 18 or over, able to consent for yourself, and your GP practice or online patient service provider is participating in the study.

It is important that people at all levels of health join the study, as this helps our understanding of health and disease. We would like you to take part whether you are in good health or have health problems.

As part of this study, you would:

• Enrol, which includes providing some details about yourself through our secure online portal.
• Provide a saliva or mouth swab sample using our straightforward postal collection kit.
• Allow information from your health and care records and other sources to be collected and used alongside your sample.
• Agree to be contacted in the future by the research team about this study and other new research studies.
• Choose whether to receive information on your genetic ancestry from your sample and some of your health information from your health and care records.

You can enrol into Discover Me online. To enrol, you would:

• Receive an email or text invitation to enrol into the study, which may be sent from your GP practice, online patient service provider or another research study you are already participating in. You will receive an invitation if your GP practice or online patient service provider is taking part in the study and you are eligible for the study.

Alternatively you may search for your GP practice or online patient service provider using the Find your GP practice search bar at the top of this page and proceed through the enrolment steps if your provider is involved in the study.

• Follow the link sent to you, which will take you to the Discover Me study enrolment website and create an account.
• View a short video and read an information sheet to learn more about the study.
• Answer some questions about the study to check your understanding of what you will be agreeing to as part of this study.
• Fill in a consent form to show that you have agreed to join the study.
• Give some simple information about yourself including your date of birth and contact details, which will be checked against your health record to make sure that you can take part.

Once you have completed these steps you will have enrolled into the Discover Me study.

Once the enrolment process is complete, we will confirm that you have enrolled, and provide you with a copy of your consent form. If you were invited to enrol into Discover Me by your GP practice, we will also inform your GP practice that you are taking part in the Discover Me study. Alternatively, if you were invited to enrol into Discover Me by an online patient service provider or by another research study you are already taking part in, we will inform the respective parties of your participation in the Discover Me study.

We will then send you a straightforward sample collection kit so that you can provide a saliva or mouth swab sample and post this back to us. We may send you reminders to complete sample collection. We will send you confirmation once we have received your sample.

As part of this study, you can choose to receive information about:

• Your genetic ancestry from your saliva or mouth swab sample, and
• Some of your health information from your health and care records.

You will be able to view this information in a secure online participant portal. We will notify you when your ancestry and health information are available to view on the participant portal, if you have chosen to receive these. Please note, these will only be made available to you if we are able to verify your identity and eligibility against your health record.

Once you have enrolled in the Discover Me study, we will check the information you have provided about yourself to ensure you can take part. If we are unable to check your identity or eligibility against your health record we will ask you to review and update your details. Please note that if we are unable to verify your identity or you are found to be ineligible you will not be able to continue participating in the study and it will not be possible to provide you with your ancestry results or health information.

We will produce genetic information from the saliva or mouth swab sample that you provide, and follow your health over time by collecting information about you from your health and care records and other sources. We will use your genetic and health information, together with information from thousands of others, to improve our understanding of many different diseases and to identify ways to help GP practices improve care.

For many years, we will follow the health of everyone who has joined the Discover Me study. To do this, we will collect information about you for research from your health and care records (for example, from your GP records, hospital records and disease registries). We may also add other information, such as from the census, or on the weather or pollution in your area, which may also affect health. This information may be collected at multiple points after you consent to take part in the study, so we can update the information we hold on you over time.

The DNA (genetic material) will be extracted from your sample and placed into long-term secure storage. We will read your DNA to produce genetic information, and will use this information to see how genetic differences (inherited differences between families because of ancestry) may help explain how some diseases are caused and how they progress. If you choose, we will also use your DNA to provide you with information on your ancestry.

Your information and sample will be securely stored by Omnigen for many years, and possibly indefinitely.

How will you protect my information and samples?

Yes, we will continue to contact you about activities relating to the Discover Me study. This may include notifying you that your ancestry and health information are available to view on your participant portal, a short questionnaire about the information you have received, and general updates about the study or your ancestry and health information.

No, you will not benefit financially if this research leads to the development of new treatments, medical tests, or other products and services. However, patients in the future may benefit from such new developments.

As with all research studies, GP practices will receive a nominal sum to cover their time spent working on the Discover Me study. This includes a small payment for each participant who enrols in the study, to cover the additional costs of taking part in research and to ensure the study is conducted safely and within the UK regulatory framework. This payment is based on national guidelines for conducting research in the NHS.

We've received a lot of interest in the study and it is taking longer than anticipated to post out the saliva kits. Please be assured that if you have enrolled in the study and you have received a welcome email from us, we will post a kit to you as soon as we can.

We really appreciate your patience whilst we work as fast as we can to send out sample kits to all participants.

Once your information has been collected and your sample has been analysed, you will be able to see your ancestry results (for example, what populations your ancestors belonged to) and some information from your health and care records (for example, your vaccination records, prescriptions over time and conditions) in a secure online participant portal. When enrolling, you can choose whether or not you would like to receive this information.

Once we receive your sample and scan it in, we will notify you by email.

We are currently experiencing a delay in letting you know if we have received your sample; this is due to high demand in study involvement and how many samples are being returned to us.

We are working as fast as we can to notify you. Please bear with us whilst we work through the thousands of kits received.

You can expect to see your health information within 12 weeks from enrolment. We aim to provide your ancestry information to you on the participant portal within 12 weeks from when we have received your sample; however, this may take up to 24 weeks. The return of your results cannot be guaranteed if there are problems with processing your sample or accessing information from your health and care records. We will notify you when your information becomes available on your portal. Please note that if we are unable to verify your identity against your health record or you are found to be ineligible it will not be possible to provide you with your ancestry results or health information.

From your ancestry results, you will be able to learn about what populations in the world your ancestors belonged to. When you enrol into the study, you can choose whether or not you would like to receive this information.

When your DNA sample is provided to us and it is processed, the DNA (genetic material) will be extracted from your sample and placed into long-term secure storage. Using a range of scientific methods, we will read your DNA and use this information to see how genetic differences (inherited differences between families because of ancestry) may help to explain how some diseases are caused and how they progress.

Your health results contain general information about your medical history, conditions and treatments which are recorded in your GP medical records. This can mean that information from other sources, such as hospitals and private clinics, may not be included in your health results.

As part of this study, you will be able to access some information from your health and care records. This may include information that you might find interesting or useful for managing your health, such as medications you have taken, vaccinations you have had and your conditions. This will be a selection of information from your health and care records and, in some cases, may only include information from the previous 12 months. When you enrol into the study, you can choose whether or not you would like to receive this information.

Apart from your ancestry, we will not be providing you with other genetic information from this study, as the results are for research purposes only.

To make sure that the information and samples collected from the Discover Me study can provide the greatest benefit for society and medical research into human health and disease, we or trusted partner organisations will share your information and sample with other institutions or organisations globally for analysis and further research. These may include research institutions, commercial organisations, universities, GP practices, hospitals, charities, and service providers.

The people who analyse the information will not be able to identify you, and will not be able to find out your name or contact details. Importantly, only information and samples which do not include your name and other information that directly identifies you will be shared for analysis. When we share your information or samples, we will ensure there are safeguards to keep them secure and private. Where additional research is carried out on your sample, we will not provide the individual results of this research to you, as they are not suitable for making diagnoses.

Your ancestry results will be made available to you through the secure online participant portal.

When a GP practice takes part in Discover Me, they do not receive your individual results but they may in the future benefit from findings found as part of the study, and this could be in the form of new medications, treatments and preventions for patients.

See will the information and the sample I provide be shared? for more information

Your health information will be made available to you through the secure online participant portal.

Whilst a summary of your health information is provided to you from your GP medical record, your GP practice does not receive your individual study results. They may however benefit in the future from findings found as part of the study, and this could be in the form of new medications, treatments and preventions for patients.

See will the information and the sample I provide be shared? for more information

No, the information will only be used for the purpose of health and care research, or to contact you about future opportunities to participate in research. It will not be used to make decisions about future services available to you, such as insurance.

Please refer to our Privacy Notice for Study Participants for more information.

Yes, we may contact you in the future to see if you would like to join new research studies. These may include surveys or trials of new therapies, and may or may not be related to this study. You might be invited to take part based on your health and/or genetic information collected as part of this study.

Taking part in new studies will be entirely optional, and refusing to take part will not affect your routine care or participation in Discover Me in any way.

We take privacy of your information and samples very seriously. All information which directly identifies you will be held securely, with access restricted to the research team. Your sample will be labelled with a unique code rather than your name, so you cannot be directly identified. Any information or samples shared for analysis with other organisations will not include your name or other information that directly identifies you. Where we share your information or samples, we will ensure there are safeguards to keep them secure and private. Researchers who analyse your samples and information will sign a contract to say that they will not try to find out who you are. You will not be identified personally in any publication or report. We will not allow the police, security services, relatives or lawyers access to your information or sample, unless required to do so by the UK legal courts.

Omnigen will be using information about you in order to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly.

Because we are using your personal information for research, under data protection law, your rights to access or change your personal information are limited. This is because we need to manage your information in specific ways in order for the research to be reliable and accurate. To safeguard your rights, we will use the minimum personally-identifiable information possible. You can contact us directly if you have any concerns about how we handle your personal information, or you can contact the UK government's Information Commissioner's Office.

You can find out more about how we use your personal information by contacting the research team.

How can I contact the research team for the Discover Me study?

If we're approached by a third party who wishes to access the data, we consider whether that party's access to the data we hold will aid our overall research objectives, or improve public health generally.

If we do decide to share data with a third party, there is a detailed assurance process they are required to go through before we accept their application for the data. Importantly, any data that is shared would not include any directly identifiable information. It would, for example, be shared with a code which Omnigen (but not the third party recipient of the data) would be able to relate back to you.

Yes, you are free to change your mind about participating in Discover Me at any time. You do not have to give a reason, and your decision will not affect your routine medical care in any way.

Once you let us know that you would like to leave the study, you will be able to choose options for further collection and sharing of information and samples, future contact, and access to your online participant portal (through which you can view your ancestry results and some information from your health and care records). If you choose to withdraw, we will not erase or destroy any information and samples already collected (including your identifiable information) and we will be unable to recall any information and samples that have already been shared for research.

If you consent to take part in the study, your doctor or relative may later inform the research team if they feel you have lost the capacity to consent to the study; or, we may pick up this information from your health records. If we come across this information in your health records, we may check this information with your GP practice. If we are aware that you have lost the capacity to consent, we will suspend further information and sample collection, future contact, and access to your online participant portal. Information and samples already collected will continue to be stored (including your identifiable information) and shared for research (including for further research after this study). If you later regain capacity to consent, you can ask to participate in the study again if you wish.

You can change your mind about receiving your ancestry results or health information by changing your preferences on the Discover Me portal. This includes both if you:

• No longer want to receive your ancestry results or health information, or
• Now want to receive your ancestry results or health information.

The majority of the information we make available to you will be taken from your health and care records held at the GP practice where you were registered when you enrolled in the study. If you move GP practices, we will still display your health information on the Discover Me Portal; however, we may not be able to continue to update your health information on the portal. If you have changed GP practices in the past, information in your health and care records from your previous GP practice(s) may not be displayed on the Discover Me Portal.

You can contact the research team at:

Email: uk@discovermestudy.com

Tel: 020 3866 8941

(standard rates from your carrier will apply)